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From NACDD's 2014 Annual Conference
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THE NATIONAL CENTER FOR PRENATAL AND POSTNATAL DOWN SYNDROME
RESOURCES AT THE UNIVERSITY OF KENTUCKY’S HUMAN DEVELOPMENT INSTITUTE
Mitchell Levitz, Mark Leach, M.A., J.D., and Stephanie Meredith, M.A.
THE NATIONAL CENTER DOWNSYNDROMEDIAGNOSIS.ORG
• University of Kentucky’s Human Development Institute
• Brighter Tomorrows
• Lettercase
• Down Syndrome Pregnancy
THE LEVITZ FAMILY DIAGNOSIS STORY: 1971
THE WEATHERS FAMILY DIAGNOSIS STORY: 2013
Last summer, Devan Weathers, 32, was 20 weeks pregnant and said, “It may not have even been a two-minute phone call … I hung up the phone and started crying in the parking lot at work, all by myself.”
“Nobody offered anything. Nobody told me about any resources,” said Weathers, who only received the services of a genetic counselor once she was in the delivery room. “I had to do all of that on my own.” [Huffington Post]
A Growing Concern• Prenatal testing technology is developing rapidly.
• Women who are pregnant or who plan on becoming pregnant say they want balanced, up-to-date, and scientifically accurate information after a diagnosis.
• There is no federal legal requirement or funding for accurate and up-to-date information.
• Research indicates the majority of patients do not receive accurate and up-to-date information about Down syndrome.
• This gap is even more profound for Spanish-speaking patients who have the highest birth rate for infants with Down syndrome but the lowest life expectancy.
SHIFTING A MEDICAL MODEL
State Laws
• 2012: Massachusetts
• 2013: Kentucky
• 2014: Delaware, Maryland, Louisiana
• Pending: Pennsylvania, Ohio
Kentucky Down Syndrome Information Act
Tips for Passing Down Syndrome Information Acts
• Get the law passed, then publicize
• Tailor your message to your audience’s political leanings
• Keep your team informed, so they are ready when you need to call upon them
• Be prepared and on time for meetings, hearings
• Work with agency contact to implement
• Appreciate that every state can enact this law
Tips for Executing Down Syndrome Information Acts
• Massachusetts: Appropriated $100,000, Department of Public Health sends out books, created web page for reference
• Maryland: Currently creating website and sending out letters to medical providers from state ACOG/local Down syndrome organizations; no appropriations
• Kentucky: Created website for reference; no appropriations
Professional Policies
• The American College of Medical Genetics and Genomics (ACMG) policy statement (2013) indicates that patients should be provided accurate, up-to-date, and balanced information about Down syndrome upon receiving a diagnosis. The statement specifically includes Lettercase, Brighter Tomorrows, and the American Academy of Pediatrics “Health-Care Supervision for Children with Down Syndrome” as recommended patient resources.
• The NSGC Practice Guidelines for Communicating a Diagnosis of Down Syndrome (2011) recommends Lettercase, Brighter Tomorrows, and Down Syndrome Pregnancy.
Supporting expectant parents
Dyan, the mother of a 6 month-old with Down syndrome, “These materials were a lifeline to me during my pregnancy ... It was a bright spot for me in an otherwise dark and scary time.”
THE NATIONAL CENTER FOR PRENATAL AND POSTNATAL DOWN SYNDROME
RESOURCES
Mitchell Levitz, Mark Leach, M.A., J.D., and Stephanie Meredith, M.A.
